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** THYROID PROBLEMS?? LOOK AT WILSON'S SYNDROME

I have been dealing with a body temp averaging 96.6, weight gain (over 70 lbs) and cannot lose it, severe insomnia, and inability to sweat and so on for over 15 years.  I am now 53 years old.

I have been to doc after doc and they all wanted to put me on anti-depressants...all of them because my thyroid testing comes back "in-range".  Is all testing a "one size fits all"?

Anyway, I have spent years trying to find out what is wrong with me when no one else could.  I located Dr David Wilson aka Wilson's Syndrome.  There are not many docs trained to understand this disorder, but it is REAL!

Let me tell you I was freezing all of the time, sleeping with blankets year round, going to a DRY HEAT sauna at over 140+ degrees for 30 minutes several times weekly...not one drop of sweat!  I would go outdoors and living in the south we have some warm summers.  My skin would be very hot, yet no sweat.  At the most, a slight clammy feel, but this was rare.  Your body must sweat to release toxins, but mainly to cool itself down when overheated.

At one point my body temperature was down to 95.5.  Over 3 degrees below normal!   Again, no doc anywhere thought the low temp or sweating was an issue.  Vertigo also became a huge factor too.  Lying down is usually when it hit me.  A positional vertigo.

My face would turn bright red when outdoors in the heat, yet no sweat.  When I cried, same thing...bright red!  The insomnia so severe I was sleeping only 2-4 hrs nightly.  Then sometimes no sleep for days.  I do not drink caffeine.  After a few years of this, I told my hubby I felt like I was not going to live much longer as I was so weak.  I took out life insurance at that point as well.  The insomnia is critical cause you must have sleep nightly so you can build your cortisol levels back up...cortisol is critical in a human.  You need deep REM sleep.

I was put on biodenticals, hydrocortisone, Synthroid, Armour over the years.  None of this worked.  There is a problem with converting T3.  Taking these for many people will not work, because many will try to to deal with the T4 part of thyroid problems only.  Again, they do not understand fully T3 or Wilson's Syndrome.

Other symptoms...low BP, low pulse and respiration. So tired by noon to 3pm I had to lay down.  I quit my job as a healthcare professional because I was so tired and weak.  After I ate anything, I felt very sick. Started having pain in my legs due to lymphatic fluid not being able to move...again from not being able to sweat

Well, a doctor that believes and was trained in Wilsons, gave me T3.  Within DAYS my temp was back up to 98.6, I was sleeping and more than anything...I was sweating!!!  I mean it was wonderful!  This changed my life!

Please look at this as the general medical community does not acknowledge Wilson's.  There was also testing done on horses for anhidrosis that could not sweat as well.  They were put on iodine and showed significant improvement.  

There is something to this and why doctors cannot comprehend this, I will never understand.  They only deem you depressed and want to give you pills so you go away and die quietly.  Sorry, I refuse to be anyone's guinea pig anymore!  Plus, how can a doc assess you as depressed in 3 minutes when they know NOTHING about you?  They cannot, so do not let them!  After over 12 docs in the last several years, I found an answer.

Again, look at the Wilson's Syndrome site and find a doctor that has been trained to treat this.  T3 is a hormone and you want to not play around with this at all.

God bless
Pat
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Avatar universal
Hi,
I hope you are doing well. I wanted to share my experience with you. Hopefully you still check this site. I am not concerned about the terminology here, but more about sharing. I was diagnosed with Hypothyroidism (hashimoto) seven years ago. I did the t4 supplementation for years and felt terrible. I did t3 and t4 combo, but symptoms remained including low body temps. I had my heat at 80 F in winters. The first time an endo tried to take away my t3, my prolactin shoot up, yet my MRI is negative for an adenoma. I took so much t4 that my tsh was suppressed for years (endo prescribed it, I am guessing way too much t4). I found an amazing doctor who tested my reverse t3 ratio for the first time after seven years, and it was awful. My doc slowly weaned me off t4 and added t3. I went three months feeling great until my body temps began to rise too much and I became fatigued. I ended up not tolerating any hormones, I would try the lower dosages of SRT3 and my temps would rise to 99.6 F, so I would stop t3 and start it again and within 48 hours fevers would return. After three months without t4 and two weeks without t3, my levels were within normal ranges (low end of FT's), although I am not comfortable with a tsh of 2.4, I have to admit I feel great. I have started taking a very low dose of t3 5mcg, not extended release and it is just doing the trick for now. Guess what was still off, my rt3 (it was 4 to 1 while taking meds and without any 9 to 1). So for those wondering, I made Rt3 without any meds. That's when I decided to add the 5mcg of t3 (doctor had suggested and I declined because of temp increases, but it was SRT3, and now I am on regular t3). I am feeling wonderful, the irony of this is that my original labs showed elevated TSH but normal ft3 and ft4, which my doc said was due to a problem with RT3 from the beginning. I ended up with a 5mcg t3 pill a day from 112 and 5 mcg t3 a day,  and I don't feel any hypo symptoms. I guess adjusting my temps helped with my thyroid condition. We are still trying to figure out why I don't tolerate t3 considering that  I am so low on the range and making RT3. So  I wonder if I had both conditions going at the same time (I don't rule out the fact that although allopathic medicine still fails to recognize Wilson, this exists). One thing I have to say is that my temps no longer drop below 97.9 f. I used to have 96.3 temps in the early morning hours, and with luck my afternoon peak would reach 97.5 F. I am no longer freezing all the time and the plus of all this, my metabolism is working, I couldn't lose a pound. ( I am thin as it is though, but had put on some weight which I attribute to t4 dosages). So this experience has seriously made me wonder about the medical community, specifically those who fail to look at conversion problems. The treatment with t4 is certainly not  a fix all solution, it wasn't for me. I am also glad to have trusted my physician despite the disheartening fevers, I believed in her and respected her professionalism and knowledge.
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I am a female, age 55. Have had a hysterectomy, but have ovaries.  I am 5' 6" and weigh 105...I generally do not eat sugar or grains because of a life time of IBS.  FODMAP diet works well, but hard to keep weight on.  Most of my life my BP has been 110/60...last couple months only 89/58.  Temperature most of my life has been 97....lately is only 94.3-95.3.  My hands and especially feet are FREEZING 24/7. My reverse T3 ratio is 15.2, my understanding is it should be at least 20.  A year ago my doc prescribed BIEST for atrophy....immediately my hair texture changed, but I did not realize it was the BIEST.  I was on it for 7 months.  Then I was put on 12 mg of DHEA and hair started falling out.  I was on that for 3 months, and quit 3 weeks ago....hair seems to have stopped falling out.  In spite of a very low fat diet, my cholesterol shot up this past year.  Below are recent lab results....can't tell if I have high or low testosterone...and the hormone test was 3 weeks after stopping DHEA.  Also having hot flashes again 24/7....haven't had them since menopause a few years ago.
Testosterone, Serum   81 ng/dL
Free Testosterone (direct)         .9  pg/mL
DHEA                 34    ug/dL
Estradiol          <5.0  pg/mL

TSH   .998  uIU/mL
Thyroxine   6.5  ug/dL
Triiodothyronine, Free, Serum    2.4  pg/mL
T4, Free (Direct)     1.04  ng/dL
Reverse T3, Serum    15.8    ng/dL

Cholesterol Total    202
Triglycerides       68
HDL    86
Non HDL     116
VLDL     14
LDL   102
Chol/HDL    2.3
Avatar universal
Thank you for sharing your experience!

I also carefully researched this subject .. AFTER my M.D. shared her personal story of deciding to do the T3 Protocol HERSELF after many years of such cold fingers that she found herself needing to leave the office early because she could no longer type to maintain her medical records!!

Through doing Dr. Wilsons T3 Protocol she had brought her temperature up .. AND had maintained a normal temperature (after YEARS of low temperature) for nearly a year when she shared this information with me.

She indicated as an M.D. she was not a qualified practitioner but would check the Dr. Wilson's website and find me one.  To make a long story short .. it is not a simple journey .. needs 3 temps a day and a VERY conscientious attention to detail .. BUT I have now brought my temperature up to OVER 98 .. many times to 98.6!!  This for the first time in my memory in YEARS!!  PLUS I don't have to wear heavy sox to bed at night in the warm weather!

I have just ended the protocol so time will tell as to how long the normal temp will last .. I will try to remember to update this post later in the year.

BUT .. IF you have researched and feel it is right for you .. give it a try .. I just don't feel there was a downside for me after careful consideration.

After reading the Mayo Clinic statement my thought was "They didn't have a name for the PLAGUE in the Middle Ages until many many people had died of it!"  Think back in your own lifetime how many medical thinking has changed with newer information/technology/genetics etc!
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Avatar universal
"Well-respected" doesn't mean they are right. Organizations like the ATA are created primarily to protect the economic interests of its members, not to serve the public health...unfortunately.
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Avatar universal
Sorry, I have not read all this forum.
I have been on thyroid medication for over six years, fist on thyroxine, then Armour and now on Thyroid Erfa. I can say, that thyroid medication has not increased my body temperature. Sublingual temerature is about 36.3 in the morning. It may exceed 37 (max 37.2) for a short time in the afternoon. Thus, low temperature may be a personal trait.

I still have some weird symptoms now and then. But I don't know what is their cause. I am somewhat "poikilothermic", I may be cold when surrounding temperature is cold and I am hot when the temperature is hot. I think that no thyroid medication is working very well for me. If the medication is increased to high enough, then it also causes side effects. I never know whether the medication is on a proper level.

Many people here are treated with only T3, and it works. Reverse T3 has not been measured for me. Some years ago , when I did not know anything about rT3, I thought that there must be a counteracting factor to thyroxine (judged from my symptoms).

I have possibly been slightly hypothyroid for tens of years before the medication. Therefore the medication is helping so slowly. I had a severe burnout during my working years. I could have slight adrenal insufficiency, although my cortisol levels are normal. My TSH went to below 0.1 as early as I was on thyroxine. Then on Armour and Thyroid it has been 0.014 to 0.04.

The cause of my hypothyroidism is not known. There were some cysts in my thyroid gland, and later the gland has shrunk to very small (due to medication?). I have also hyerparathyroidism, posssibly  due to hyperplasia.

A T3-only medication interests me, But because T3 is short-acting and I am already 65 years and apt to atrial fibrillation, I do not dare to use it. My weird symptoms remain as a mystery. The cause for my atrial fibrillation peroiods is not known. And - dysautonomia has been diagnosed for me (on the base of fluctuating blood pressure, heart rate, temperature, eletrolytes, fluid, neurologic symptoms  etc). Yesterday hypochondria was suggested to me. I don't agree it at all.

Sorry, this post is disorderly. I wrote it very quickly.
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Avatar universal
Pat I love everything you said. The problem is society is blinded by western medicine!! Like you said they prescribe meds for everything but NOBODY wants to fix the problem. There is no money in healthy people. Glad your well!! Your experience has encouraged me.
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Avatar universal
Hi and welcome to the Thyroid Patients' Forum.  It was very refreshing to have someone from the medical community post something that is positive and informative.  This is opposed to the normal,  where we get criticized for not just accepting the "Immaculate TSH Belief" and "Reference Range Endocrinology" of many of our doctors,  and then we actually have the audacity to ask questions when we are still suffering with hypo symptoms.

You happened to post on one of the few threads where we spent time enthusiastically questioning each other about some strongly held beliefs.  We try not to let any unsupported statements go unquestioned, in order to try and provide the best info to our members.  We do a lot of research on our own to make sure of what we say.  And we welcome opposing views from medically trained people as long as they are willing to engage in a discussion and provide some references that support their statements.  Unfortunately, that doesn't happen.  No one yet has provided any statistically valid data that supports TSH as adequately correlated to either FT3, FT4, or symptoms.  Basically all we have heard is that what we suggest is wrong and the standard approach of using TSH and  Reference Ranges is correct, and that we should leave it all to the experts.  Unfortunately again, that standard approach (frequently unsuccessful), is basically why we are all here as members.

Thanks for the information about the research and discovery of those hormones.  I'd like to be optimistic and think that such research will be a medium term benefit for us and for future members.   On the other hand, over 8 years ago  the AACE recommended that the reference range for TSH should be revised, yet most labs and doctors have yet to adopt such a simple change as that, which is very hard for us to understand.  So I don't hold much hope for your research answers getting into main stream medicine  for a long time.  In the interim we will continue to do our best to give useful info to our members.  If you are able to spare the time and can give us any better suggestions short term, we would welcome having a discussion.  
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649848 tn?1534633700
COMMUNITY LEADER
That's an interesting post.  Do you have links to any of the studies being done, so we can look at them?  I've heard of several of the hormones you listed, though I'm not real "up" on any of them.. I do know that ghrelin is the "hunger" hormone and leptin is the one that tells us we're full, and I've heard that some people can be resistant to leptin.  

WE (on this forum) have been saying for ages, that some people don't convert T4 to T3 properly - I happen to be one of those and I had a heck of a time with the pcp who diagnosed me because HE insisted that Synthroid was all I needed for medication and that TSH was the ONLY test that needed to done in order to treat my hypothyroidism. He also told me that the only problem with my weight was that I "need to MOVE more", when I exercised daily and have a very physical job and never had a weight problem before.  

It's not us patients whom you have to convince about some of these things -- it's the doctors who treat us. Too many of them have the "Immaculate TSH belief", and nearly all of them believe that if labs are "in range", that's good enough, even though the patient still feels like cr@p.   Fortunately, *I* had an ENT who realized my pcp wasn't treating me properly, so he sent me to an endo, who not only tests TSH, FT3 and FT4 *every* time we do blood work, he's willing to prescribe T3 medication, along with the T4 (I'm on the new Tirosint) AND he's willing to listen to my symptoms and try to help alleviate them.  

There aren't enough doctors out there who are willing to treat symptoms; they want to treat labs.  

We very rarely completely rule out possibilities, but when there's science that contradicts something, as in the original subject of this thread .......  

If you have some links to these studies, it would be great to see them.  In addition, it would be nice to know where to find doctors willing to look into these things; most won't because insurance companies don't pay for things like that, or the doctor "assumes" that if the patient has a weight problem, it's the patient's own fault (i.e they eat too much or don't exercise enough).
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Avatar universal
Hi guys,
I'm not going to get into symantics, but would like to discuss some recent studies.  There's a lot th medical community is still learning about metabolism.  I'm a doctor admitting we don't know it all yet.  It turns out that fat cells secrete a ton of hormones and inflammatory markers.  I think that over the next ten years as we learn more about these hormones, we'll realize thar hypothyroidism is actual a grouping of diseases rather than one single disease.  

Literally, hypothyroidism could be as many a 100 different diseases.

After we discover each hormone, then we have to research where it comes from, what it binds to, what triggers it and how it relates to thyroid hormones.  Leptin, a recently discovered hormone of fat, has been found to be inversely proportional to the enzyme needed to convert T4 to T3 in tissue and proportional to it in the brain.  Some people are now being found to be leptin insenstive.  Some people have abnormalities of the receptor for leptin.  These are people we used to diagnose as hypothyroid, yet our understanding of leptin is still very young.  

Here are some of the hormones we've discovered in the last 5-10 years that relate to metabolism...

Adinopectin
Leptin
orexin
resistin
neuropeptide y
gherlin
cholecystekinin cck (more roles than we thought)
gut bacteria play more of a role than we knew (just started to figure that out in 2006)
resistin
il-6, tbf (secreted by fat cells)

recently discovered the brain centers for hunger:
in ventredial hypothalamus
orexigenix and anorexogenic centers

The first article mapping sleep centers as they affect hunger and metabolic hormones was published this year.

We're roughly ten years away from the answers.  Hold your criticism of each other and don't be too absolute.  Your all struggling with a frustrating problem that is poorly understood and may be different for each of you.  In fact, I recently presented a lecture to doctors who graduated from med school 2 years ago.  Most of them only knew about 2 of the hormones I mentioned.  I'm surprised anybody can rule in or out the possibility that a subset of hypothyroid patients may not convert T4 to T3 properly.  It looks like the rat and cat studies published this year suggest otherwise.
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1611319 tn?1378618399
I will being praying for your brother-in-law, sister and for you.  I am very sorry that you are having to go thru this.  I know you must be such a help to them at this time.  

It sounds like you were very cautious before you approached your treatment. And although you do not need anyone's approval, I commend you for that.  I think that is all the forum members are advocating here also. Everyone, including you, are concerned for the health of each other. That is the only reason why we post.  To extend experiences and brainstorm together the issues of the thyroid.  This is why we list as much information as we can, for others that may not have the same accesses (because of dial-up, being so slow, many quit trying to look) so they too can make some informed decisions.  You are posting the information that you have and some of us are posting information that we have obtained.  I know that you being in the health field understands that. That is why i would assume you did so much research.  Many  do not have the means or abilities to go to the labs and do the research like you did.

I do not remember are you still on the Cytomel?  If not, how long where you on it? In regards to your visit to the lab, Can you explain about T3 compounding?  I am interested in learning this.

Again, I hope the best for the health of your brother-in-law.        In  Faith,  -sass-




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Avatar universal
I am sorry to hear of your health problems. I hope you can get the answers and treatment you need to have your health restored.

I am out of town visiting my sis and her husband who is very ill. We fear CA, so I am here to help drive them since we have to go to a large city for all of his medical appts as no one else can see him locally.  They live in a very rural area, so I am on dial-up Internet if that tells you how rural this place is!  Too, they being in their 70's, I can help around the house.  

**  First of all, I want to say that I am not advising or instructing you medically.   To do so especially since you are under the care of a doctor, some would consider practicing medicine.

However, I will be glad to share with you my story...

With that, I had been seeing doctors who were treating me for hypothyroidism.  I had extremely low cortisol levels and then came the peri-menopause problems as well.  I see we are about the same age, so I do not if you are dealing with those problems, but it has been the most horrible times of my life healthwise.  Since I have seen so many doctors, I will tell you of the last two and the treatments.

The doctor prior to the WTS MD, had me on bio-identicals, Cortef (low then high dose), Synthroid..then changed it to Armour.  After a few weeks of this, I was so sick and weak I could only walk a short distance and have to sit on the floor or the ground.  I felt like the next breath I took would be my last one.  My body temp had dropped to 95.5 and I was freezing.  Thank God I decided to stop this!  My husband who also was being treated for hypothyroid issues, was given in addition to bio-identicals and Armour..DHEA.  Three weeks later we were in the ER cause he thought he was having a heart attack.  The doctors there felt it was the DHEA causing the problem.

So we like you have been down a long road of hits and misses...more misses than anything else.  

Before I sought out the WTS MD, I made major lifestyle changes.  I stopped eating any food with nitrates or hormones.  Basically, I went organic.  I had a water filtration system installed at home to get the dissolved solids, flouride and chlorine out.  I switched my detergents to ones made from plants...no chemicals.  Had all of my metal fillings removed.  I sought our homeopathists, acupuncturists for help.  Had colonics and chelation for several weeks to also help reduce the toxins in my body and see if I could get some balance in my digestive system after so many meds previously.  While I did get some relief, I was not "well".  I was however better than when I was on the protocol the doctor I mentioned had place me on...it just had not worked for me.

I saw an MD that I was referred to by my Chiropractor.  His wife had seen him and this MD was supposed to be in Wellness care or as some would consider...alternative.  So all serum, urine, fecal and saliva (for the for time) tests were ordered.  The docs I had seen before did not find them (saliva) as accurate, so none were ever ordered.  

This particular doctor spent 1.5 hours with myself and my husband after labs came back. I was very low on several things such as Cortisol (am) (evening), Progesterone.  Thyroid was low, but since I am not home, I cannot provide those results.  Will be glad to provide them for you when I return.  I do recall Cortisol (am) was around 1.9.

It was there WTS was explained to me at length.  I came prepared as I had all of the articles written on Dr Wilson I could find.  I was fearful after the incident with Dr. Wilson in 1988, then too his license was revoked (for 6 months)

I was not going to let anyone ever again put me on meds and get to the point I was at with the previous doctors.  Too, I was so concerned about taking another Rx, I was going to make sure I absolutely knew what I was getting into.  Hormones are nothing to play around with.  


The main things that I "considered" with WTS:


2.  The dosage for Cytomel started at 7.5 mcg.  

3.  The Cytomel was compounded.  .

4.  The length of time to take Cytomel was not extensive.

5.  The fact my body temp (95.5/3.3 degrees below 98.6) was continuing to drop and no one before was concerned I was sub-normal or even able to perspire as I stated before.  

After 15+ yrs of being sick, this was something I thought was important.  I also had started having severe vertigo with Nystagmus and was progressively worsening.  I was hospitalized for that when I was being tested for the vertigo to rule out Meniere's, went into a vertigo episode and could not recover from it.  I was hospitalized immediately for three days. I was never given an origin of he vertigo, yet they ruled out Meniere's.

6.  The sudden weight gain and the inability to lose that weight. 70 lbs, as well as the typical symptoms found with hypothyroid and adrenal too.


Still, I was NOT on board with WTS.  I contacted the lab used for the T3 compounding.  My husband and I drove there to meet the staff and obtain further info.  We had many questions and wanted to get as much information as possible.  I had never been Rx Cytomel before and wanted to make sure I knew everything there is to know before another drug before it went into my body.


Still, I was NOT on board with WTS.  I started looking into various medical forums, libraries and writing to many people to get information from them. Finally, after 4-5 months from my initial visit and much research, I decided to go back to my doctor.

Since it had been so long since I had seen my last doctor, new labs were ordered to get my current levels and two weeks of taking temps and charting them.  I had a followup visit with my doctor to discuss things.  My levels had changed, so I was not getting better.  Now, my liver enzymes were elevated.  Too, I was having more edema than before in my extrmeities. No ability to perspire, severe insomnia and weakness.

It was then I decided to proceed with the WTS protocol.

I already gave my story and results.  As I will tell everyone, what worked for me most certainly may not work for you.  Your condition differs from mine greatly.  I am only several months out, but I think the lifestyle changes I made, espcially diet have helped more than anything.  I thought this was a good place to share my experience, sadly I was mistaken.  If it helped you, then I am happy.

I will be out of pocket for the next few weeks.  My husband is taking the laptop back with him when he leaves in a few hours, so I will not have a computer to use.  Pending what happens with my brother-in-law, I may be here longer that first expected.

You are in my prayers and I know God will help you.  Do not lose faith in Him.
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Avatar universal
It will be very interesting to see results of your new bloodwork next week.  In the interim, would you please post your latest test results and reference ranges for TSH, free T3, free T4, Vitamin D, B12, etc?
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1376367 tn?1319226427
I too have been dealing with Thyroid issues for quite a while and have just recently gone to see a doctor in the States, Bellevue Wa. about my Fibro and Fatigue.  I think my issues have gone past the Thyroid only problem and affected my cells.  This doctor in WA. is doing a Reverse T3 and I will be hearing from him next week about my blood work.  I too have been told by this doctor about Wilson's Syndrome and have been on Synthroid and Cytomel and had to stop this treatment cause it stopped working for me.  I was experiencing side effects from the Cytomel medication, such as chest pains and breathing difficulty.  When I stopped the medication, the side effects also subsided, however the problem was not resolved as I am currently taking simply Synthroid T4 meds at a higher dose and find that I am not good with that alone.  I anxious to know what the blood work will show that I had done at the Fibro and Fatigue Center.  I live in Victoria, B.C. Canada and travelled over to the States to find help as I could get nowhere with this medical profession here.  I had spent over a year and half trying to get help and like you they were constantly pushing the antidepressants and also saying that I was possibly bi-polar.  Seeing Dr. Vereen in Bellevue, he has shed a new light on this complex issue and I am currently taking energy injections to help rebuild the mitochondria cells that are causing me the muscle pain and fatigue.  Should Wilson's Syndrome be part of my problem, it will help to clear up a lot of my problems, I'm sure, but I'll have to wait till March 15, 2011.  I have an appt. with this doctor to go over the blood results and what the next step for me will be.  I'm glad I came across someone who also has been dealing with this strange problem.  The injections that I take also help with the liver as the liver is not able to convert the T4 into T3.  If you have anything that would be of help to me, I would love to know.  Thanks for sharing your experience.  I've come across a lot of negativity surrounding
this issue of reverse T3 and Wilson's Syndrome.  
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1611319 tn?1378618399
The discoverer of Wilson's Syndrome graduated in 1985 from University of South Florida medical school.

He then spent a year at University Hospital in Jacksonville, doing an internship in family practice. That is the limit of his formal training and is the minimum amount of education required to practice medicine in Florida.

Wilson then worked at two walk-in clinics before joining the Institute of Specialized Medicine weight-loss clinic in early 1988.

The institute ran advertisements in The Orlando Sentinel that claimed it could ''medically readjust your metabolism so that your body can burn off those calories without starvation or strenuous exercise.''

The treatment entailed giving patients doses of Cytomel, the medication given Lois Flurkey.

Here was the reasoning behind such treatment: The body's metabolism, such as the heart and breathing rate, is controlled by the thyroid system. To give the body energy, the thyroid releases a hormone called T4. This hormone is like raw petroleum. It flows into the blood, where the body converts it into T3, which is like high octane gasoline.

It is this T3 that powers the body's metabolism.

Cytomel is a synthetic version of T3. And like the real thing, it kicks the body's metabolism into action. Some weight-loss clinics once assumed that if they could speed up the body's metabolism, they could cause it to burn more calories.

Unfortunately, a dose large enough to get the body to burn added calories causes complications, such as heart palpitations and rapid breathing. This mimics a disease called hyperthyroidism, in which the thyroid produces too many hormones.

Some Central Florida doctors say that Wilson's patients from the weight clinic began coming into their offices with elevated heart rates and palpitations.

Lois Flurkey was an overweight 50-year-old woman who went to Wilson in 1988 at the Institute of Specialized Medicine weight loss clinic. He started her on a small dose of Cytomel -25 micrograms (a microgram is 1/1,000,000th of a gram).

In his court deposition, Wilson claimed that Flurkey kept increasing her dosage without his permission. But he kept increasing her prescription to match the levels she was taking.

Eventually, Flurkey was taking 225 micrograms a day. The Physician's Desk Reference, a book that lists drugs and their recommended dosages, says that an average dose of Cytomel would be between 25 and 75 micrograms a day

According to court documents, Flurkey complained to Wilson of pain in her chest and left arm in July 1988. In his deposition, he said that he recommended she get a cardiac examination and take less medicine. But he said that she refused a cardiac examination because of the cost. And he said that she pleaded with him to continue prescribing the Cytomel. And so he did.

He also had her sign a release acknowledging she knew there were dangers with the treatment.

Flurkey died of a heart attack in November 1988. Wilson says it is only a matter of opinion on whether the Cytomel contributed to her death.

''If there was a lack of judgment ... maybe you could say I weighed too heavily the pleadings of a patient who was getting benefit from the treatment,'' Wilson says. ''Maybe I cared too much about her feelings. Maybe it was foolish. Most doctors might say, ''Well, you're pleading with me. But for my own sake, and for the sake of my peers, you are on your own. Have a nice day.'

''You could do that. But how would I feel if I was in her position. If I was feeling better than I had in years'' and the doctor took away the medicine.

Two days after Flurkey died, the family called Wilson's office to ask him about the Cytomel. ''He dropped everything and came over to the house,'' says Ann Belanger. ''He came over waving the release forms she signed, stating she was aware she could die from treatment.



Mr. Wilson is on a radio talk show in Des Moines, Iowa, getting out the information. Wilson is on a lot of radio talk shows these days, promoting his book and his syndrome.

The usual format is for Wilson to explain Wilson's Syndrome to the disc jockey, and then the callers ask questions.

The disc jockey starts in with some questions: Can Wilson tell just by looking at someone if that person has Wilson's Syndrome? Yes, says Wilson. Sometimes when he is walking in a shopping mall he spots people suffering from the problem.

Are redheads prone to this affliction? Yes, says Wilson. He has noticed that people with light skin and freckles are more vulnerable.

Patty calls in and says she has suffered from memory loss and fatigue and the medicine the doctor is giving her doesn't help.

Wilson says Patty could use some of his thyroid medicine. ''Absolutely.''

Regina calls in. She is ''smiling through her tears.'' Everything Dr. Wilson says fits her symptoms perfectly.

And then the disc jockey asks: ''Another caller mentioned he was advised by doctors about heart problems and other things (osteoporosis) that could be aggravated by taking the thyroid medicine. What is that all about?''

And Wilson answers: ''Well, there's the one thing we should remember, I guess it sounds ... I could see how someone listening might think I'm, I'm rather, I mean I'm being a little antagonistic toward other doctors. But, I don't, it's not that. The thing is that it's just when it's considered exhaustive, like it's just not appropriate when doctors consider that what we have so far is exhaustive because it's far from exhaustive. It's a lot less of an exact science than we make it out to be. Anyway to answer your question about this heart and osteo business is, is that we have to remember that a doctor needs a good rationale for prescribing medicine and it's like just like when you walk around in a roomful of furniture in the middle of the night you want to turn on the lights to see where you're going and that's kind of what's been missing for this thyroid-type treatment. And, and there have been some studies that show if you take too much of the wrong kind of thyroid medicine for too long, there is a chance you can get thinning of the bones. But none of these tests take into consideration body temperature patterns. I feel that a person taking thyroid medicine and they're not taking into consideration their body temperature patterns, they're not taking it in a way it as a way it should be done optimally.''
(end of article)

{My search of Flordia's Department of Health  for Medical Licensed Doctors Finds Dr. Wilson's License to be "Null and Void", due to his own failure to produce his mandatory information. Not due to this death.}

I copied and pasted this from an article about and interviewing Dr E. Denis Wilson, founder of "WTC"...I did not copy the entire article as it was 14 pages long.  I copied what I felt was pertinent to this issue..If you are interested in reading the article in its entirety, I can post the link if you like.  As I make no statement here, I encourage you to make your own decisions.  I made no changes .


Pat, If you don't mind me asking , Because you have mentioned a couple of times that you are a licensed medical profession has made me curious,  what medical profession are you licensed in?  

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798555 tn?1292787551
Nothing like a good discussion!

I would just like to THANK all the "thyroid obsessed" "armchair physicians" on this forum that shared some excellent thyroid information with me the last two years.

For ten years I was a sick, hypo, in pain, Hashimoto patient on only T4 meds, with TSH and frees on the hypo end of the 'ranges'. Now I'm feeling ............well,.... pretty dam good on dessicated (T4/T3) with Ft3 in the upper third. Coincidence? I think not. Many others here and on other forums have learned about this....and it was not from doctors, that's for sure.

One doc even said I had Fibro, since my thyroid med put me "in range" but I still felt like crap........not! One said no one ever needs T3 meds. Another said Armour or any dessicated med was just for old people that are "afraid to change" to modern thyroid meds.

Personally I like learning, improving health, and I don't like living with my head in the sand. That's just me. And its paid off.......big time.  Improved health was the result, from the help of people donating their time for a good cause, (on the internet of all places).......to help others increase their quality of life when thyroid disease has taken its toll.

In return to others, I hope to help them by sharing useful thyroid information that I've obtained here, from books, and my personal experience with years of Hashimoto. Its the least I can do as a human being. Is analyzing a bad thing? If it was, I dont think I'd get paid to do that in my everyday profession. Remember......for years people thought the earth was flat..........because others (the professionals) said so........until an over-analyst proved otherwise.

Wilson's and Reverse T3 are interesting subjects. Not much technical info from peoples experience posted here either.

If thinking out side the box makes some 'thyroidians' over-analyzing technical thyroid geeks (my self included), all the better. I like the facts, that's how we learn and get better. That's how mankind evolved into the modern world. I didn't come here for someone to hold my hand,  that wont make my thyroid better. But facts will.

For people that feel good on the lower end of the 'free' ranges and on only T4 meds, well that because that is all your body needs. Consider your self lucky! - You may have no idea what it was/is like for the rest of us whose bodies need more than than the standard hypothyroid treatment. If I felt fine from the get go on the standard treatment, I would not be here. And why would anyone else that that feel great from day one on the standard treatment question others that dont.

Just in case someone thinks I'm being a bossy loud mouth......... Well, sorry, hike up your skirt or turn the computer off........ LOL

Again, thanks to all that exchanged good positive, very informative thyroid facts the last two years. You know who you are.  

Peace and keep on analyzing!
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
The only pages I know of people "bickering back and forth" recently is this one, so I might suspect that you came looking for it.  If that's not the case, I'm sorry you happened on this one right away.......

You are right -- new diseases are found fairly often; however, Wilson's Temperature Syndrome is not new, by any means....... it's been around for many years and back in the 90's the doctor who "discovered" it, was stripped of his medical license, and numerous studies have been done to show there is no basis for the treatment protocol.

Maybe it would be in your best interest to start a new thread of your own, with your particular issues, so we can address them independently.  When you post your thread, it would be good to post current labs, with reference ranges (these vary lab to lab, so must come from your own report), along with whatever other information might be pertinent to your own situation.  
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Avatar universal
What in the world?  I was off from work today, just too fatigued and achy. I have been sick since 1996. I just had a scan that indicated a dominant nodule in or behind my thyroid, and have an uptake scan scheduled next week. Anyway, I thought I had found a place where other people were sharing their experiences and supporting each other. Wow, was I ever mistaken. All I found was pages upon pages of people bickering back and forth about who is right or wrong! I do not believe I will be reviewing anymore data here. Just keep in mind that new diseases are found fairly often usually by a process of elimination and identifying symptoms unique to them. By the way can anyone recommend a place where other people were sharing their experiences and supporting each other?
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Avatar universal
.Anecdotal evidence from the web is only a part of my source material.  I constantly search for scientific studies that support what I say to any member.  I also find lots of supporting info from people who are in the medical profession.  I can readily provide you links to such info, but you might quickly find your self buried with all that I have bookmarked over the last few years.  

I seriously doubt that any of the people that you consider as obsessed, or that over analyze, are relying only on what they read on the web.   In fact we try to guard against that kind of info, unsupported by scientific facts, from getting into this Forum.  Just as we responded to patriciat on this thread, questioning whether WTS was a valid diagnosis, or not.  We don't do it to question anyone's veracity, or their experience.  We do it to make sure that the info and recommendations presented to our members are the best that we can do and that we are confident of its accuracy.  It would be a discredit to the Forum to do otherwise.  In fact I think it is one of the strengths of the Forum.

I'm very sorry that you have the misunderstanding about what is presented on this Forum.  I hope that you will take the time to delve more deeply into the many threads on the Forum.  I think if you do, you will realize that you were mistaken.

I did not disregard patriciat's information.  I questioned the assumptions behind it.  I am still reading the WTS site and other materials.  I won't stop until I am satisfied that I have resolved related questions in my own mind, and then I will post further.
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Avatar universal
patriciat:
"Why would I not consider myself having a "thyroid issue"?   I have no agenda.  I belong to NO association or have any afilliation linked to WTS.  I was treated with a drug used for thyroid disorders.  How can that not be thyroid related?  That is why I posted in this forum."

From what I've been able to infer, your thyroid gland is healthy, as is your husband's.  I say this because neither of you is on thyroid meds any more (correct?), so we have to assume that your thyroids are able to produce T3 and T4 in appropriate amounts.  Therefore, you do not have primary hypthyroidism.

Of course, there are other conditions that cause hypothyroid symptoms and can be treated with thyroid drugs that are not properly thyroid dysfunctions, e.g. secondary hypothroidism, which is actually a pituitary dysfunction (once again, the thyroid is healthy, but the resultant symptoms are hypothyroid).

Any dysfunction in conversion also fits into this group since conversion is not a thyroid function, but a metabolic function.  

Of course, none of these is mutually exclusive.

I think this is important on many levels, and I have some questions that I would very much like answered.  If you have been lurking (people who read, but don't contribute) on the forum for a number of years, I'm sure you have seen me recommending people research RT3 dominance when I think it's appropriate.  I am not convinced of its validity or invalidity, but I certainly would give it as much credence as a diagnosis of fibro or CFS, for example.

My question is if RT3 dominance ever occurs independently of hypothyroidism and hormone replacement, i.e. do people with perfectly healthy thyroids, not on thyroid meds, develop RT3 dominance, or is it, in effect, a "complication" of primary hypo or the meds used to treat it?

I agree with Emily, the moderator, that this has the potential to be a great discussion, so let's start exchanging some information.  I believe that she meant everyone when she suggested stopping the anger and the attacks.
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649848 tn?1534633700
COMMUNITY LEADER
Yes, we are saying that our medical profession lacks training.  The time a typical pcp gets on thyroid training in med school is minimal.  Not even a lot of endos are good thyroid doctors. Any doctor that discounts obvious symptoms as "hypochondriac" or "non existent" is not a good doctor, whether it be regarding thyroid or other issues.  

I'm speaking only for myself, but I think gimel and goolarra will probably agree with me; I'm not right, simply because I read it on the web; I am right, because I see too many patients being treated, based solely on TSH, and they aren't getting well.  You have to admit there has to be a reason; and 9 times out of 10, that reason is because FT3 and FT4 are not being looked at, or if they "are" being looked at, they are being ignored or considered as "normal", no matter where they fall in the ranges........ what's normal for you isn't necessarily "normal" for me and vias versa.  gimel has some excellent data on the ranges and how they should be revamped, like the TSH range; which by the way, was changed over 8 yrs ago, but most labs and doctors ignored AACE..

As to disregarding someone elses research -- yes, I do that sometimes, if there is more evidence against a treatment protocol than there is for it.  Our goal is help people get well, and if I see a protocol that could be more detrimental than helpful for some people, yes, I will discount it.

As to over analyzing - I try not to do that, because a lot of newly diagnosed people, didn't know a single thing about thyroid issues until they got the call from their doctor saying they are hypo, or hyper; they don't understand what is happening to them, so in some cases, it's important to help them along the way, one step at a time.

In regards to "whose word to believe" - the patient is the only one who can make that determination.  I/we freely admit that we aren't doctors; we simply try to guide and support people based on our experience and research.  
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Avatar universal
This thread may have too much going on in it already to launch on a discussion of the merits of TSH.  

How do I know whose word to believe?  I filter everything through my little brain and draw my own conclusions.  

"The web site says TSH is not worth testing, however, millions of doctors use that, so we are essentially saying our medical profession lacks training, however, we are correct because we read it on the web."

No, not because we read it on the web, we are correct because we see how many people are misdiagnosed and mistreated based on it.  How many people have to be mistreated due to TSH-only testing before we are convinced?

In my one post above, I was actually trying to get an exchange of information going.  I find this subject interesting, and I would love some more information.  It has not been forthcoming.  If we can't exchange ideas and opinions without being viewed as "attacking", we really have no business existing (the forum, that is, not individuals).

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Avatar universal
Okay, may be obsessed is the wrong word.

I should had worded it as "over anaylze".  

You guys say you research the web for ideas, answers, information, which is fine. At the same time you disregard someone's elses research on the issue because it does not match your view or what you have read.How can you believe one web site over another. How do you know whose word to believe? The web site says TSH is not worth testing, however, millions of doctors use that, so we are essentially saying our medical profession lacks training, however, we are correct because we read it on the web.

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649848 tn?1534633700
COMMUNITY LEADER
Everyone is entitled to an opinion.

We all know that the medical community often lacks in knowledge regarding thyroid issues (as well as others) and many of us have had to fight, long and hard, for proper treatment.  We also know that there are a lot of people who come to this forum, every day, looking for the exact help we give them, because they *don't* know what tests to ask for, where their results should fall in the ranges, what that ultra sound report means, etc. Many of them "assume" that the doctor knows best, and follow blindly (even I did that for a while, until I found this forum and started reading posts); this often keeps them sick for much longer than need be.  

The obsessed people on this forum helped me get well, and while I could have walked away to enjoy my life in peace and quiet, I chose to stick around and pay it forward, which why I sometimes, spend hours/day on here responding to posts and trying to help.  Judging from the number of PM's I get on a daily basis, I must doing 'some' good.

If my desire to help people, in turn, means that I am "obsessed" with thyroid issues, then yes, I guess I am.  It turns my stomach every time I read a post from someone who is desperately ill, and whose doctor refuses proper testing, medication, etc. or maybe doesn't even know what to test for or how to interpret labs.  I  will save my sympathy, knowledge and research abilities, and whatever other attributes I have, for those who appreciate them.

As I said in a post on this thread earlier today --- Just because a doctor said it or did it, doesn't mean it's right.

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Avatar universal
Like I said, my opinion. some become to obsessed....
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Avatar universal
I have to agree with gimel and jenniferk86 that I don't quite understand how this constitutes "obsession".  Perhaps what you meant was that we were being presumptuous...that we had no right suggesting tests or interpreting results.  The medical community has demonstrated a serious lack of knowledge when dealing with thyroid issues (not confined to thyroid issues, in my opinion).  As gimel said, most of us have done lots of research, much of it in pursuit of our own thyroid health.  In the process, we have been exposed to more imformation on  thyroid (and much more patient input) than the average doctor's training provides.  

How would you suggest patients get their information?  
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